IVIG(intravenous immunogbulin)

[Dermatray15]

Is anyone taking IVIG(intravenous immunogbulin) for dermatomyositis? Is it helping your condition?

[Jo-Goode Administrator]

Hello,

I've been on IVIG since 2013 to maintain my symptoms of Dermatomyositis (DM). You need to drink plenty of water before, so it's easier to cannulate, during and after and have it run slowly rather then protocol rate to avoid side effects.

If your in the UK Myositis UK's largest forum is over on facebook facebook.com/groups/Myositi...

Regards, Jo

[Carole15]

Hi, I was given it early on after diagnosis of DM . It helped enormously. I had dysphagia at the time and hadnt been ablw to eatfor 2 - 3 months and the IVIG was the treatment that resolved it. As Jo said, make sure you are given it very very slowly to avoid nausea or headaches. Good luck.

[Jobug]

I have gotten one round of IVIG. It didn’t help me. My insurance won’t cover enough of the treatment to make it worth it to me to continue in 2 weeks, when I am due for another treatment. I have heard that it can take 3-6 month before you notice any improvement. Even though it might work after a couple of months, I can’t afford the treatment. Instead I an getting imuran added to my treatment plan.